Sorry for another delay in blogging. It’s been busy. Between doctor’s appointments, hospital stays for chemo, blood transfusions, cleaning, and taking care of the kids, the days just fly by. I don’t know what I would do without my mom here to help and people bringing us dinner. A HUGE thank you to everyone who has brought dinner or is planning to bring dinner. You have no idea how much we appreciate it. Also, thank you to everyone who has sent us gifts. We are so thankful for all the support from our wonderful family and community. One more thank you to Tammy Guinan for organizing a super cool clam bake for our family (and even calling a radio station about it). We are really hoping that Roxy will be out of the hospital and have good blood counts so we can go to the clam bake. I think it’s going to be a blast!!!
Roxy has been doing really well lately. She handled her last 5 day chemo like a champ. We are finding more ways to make the hospital stays better every time we go in. We bought a mattress topper to make the hospital bed more comfortable which has made a huge difference. Roxy says it feels like she’s laying on a cloud. This time, I also made up little gift bags for each day with little crafts in them. It worked out really well because she had something fun to look forward to every day. Luckily, I have a few weeks to decide something fun to do for the next stay. Let me know if you have any ideas.
The biggest recent news is that Roxy decided she wanted her feeding tube taken out. She had a very mature breakdown about 2 weeks ago. She said she was sick of having the tube. It made her feel like she was choking every time she swallowed, so even though she was hungry, she didn’t want to eat. It had also started to make her throat dry and sore (she has had it in since April). Her nose was irritated under the tube, and the skin on her cheek was raw from having tape on it all time. Honestly, if it were me, I would have been fed up with it too. So, on Friday night, I pulled it out (my nursing skills are becoming quite impressive – ha ha). We told her that she needs to eat a lot so she can keep it out. Unfortunately, she has lost a little weight since we took it out and I think the nurse practitioner wants to put it back in, but I’m really hoping we don’t have to. Roxy’s mood is soooo much better without the tube. She can eat and drink and be more comfortable. She is so much happier. I’m trying to load her up with calories so she can gain some weight and keep it out. We’ve noticed that kids with cancer who are a little older than Roxy don’t have tubes, but most of the kids younger than her have them. She’s kind of at an in between age. I’m just really hoping she can put on a few pounds and keep it out.
Today, the doctor said we should have new scans done in the next few weeks. That’s always exciting but also scary. Hopefully the tumor is even smaller, and this time, she will have a PET scan, so we can find out how much of the tumor is still alive. Bone tumors die and then are absorbed by the body.
We still have a long way to go with chemo. We are hoping to be done in January, but no one really knows at this point. Roxy’s bone marrow is pretty tired and it takes a long time for her counts to get high enough that she can have chemo again, so our schedule is pretty crazy. We do know that our next stay (which should be next week) is just an overnight so that’s pretty easy, then we’ll have outpatient chemo the following week, and after that it’s another 5 day stay. We should only have 3 more 5 day chemo stays, though, so that’s definitely a positive.
I think that’s about all the news. Thanks again to everyone for everything! We are all so thankful for your love and support.

5 comments on “We’re Still Here

  1. Krystle Suszter

    you know me, always stalking with the best of intentions <3 you guys are all champs, and I'm so happy you have so much support between yourselves, friends, and family! lots of love and hoping that tube stayed out & y'all are doing well <3 Stay strong, keep on keepin' on, and love with all you have. I'm super proud of all of you… nothing is easy in life, and nothing is easy when it comes to cancer treatment (duhhhhhhh you knowwwww). Lots of love from me to all of you. And as always, if you need anything nursing related or otherwise, I got you :0)

  2. paul moroney

    Hey, I responded to the clam bake poster inquireing where to send the check for tickets and I have not gotton a reply. I think we need to make it easier to get tickets. Most people will give up after the first try. PAUL

  3. Christy Vaughn

    It is nice to hear your updates, we think of all of you often! Julia and Roxy were just chatting today via text 🙂 I am thinking you may already have this (an idea for your next hospital stay)… the rubberbands and looms for the new bracelet trend?? Feel free to facebook message me if you don’t… I would be happy to pick up the stuff for Roxy! You are doing an amazing job with all that is on your plate! Roxy is one tough and strong little girl!

    1. lynn

      great idea!!

  4. Peggy Youdath

    Thanks for sharing .. You and your family are doing an awesome job at tackling this disease. Thinking of you and your family ….